This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Were any of you also diagnosed with Lichen Sclerosus? That's what my Dermatologist originally said that I have. At this point I can't get a clear answer on if it's Lichen Sclerosus, Vulvodynia, or both. Just looking to see if anyone has/had that and what they've tried. I'm willing to try anything at this point to get my life back.

This is going to be a long post so I apologize in advance! I was diagnosed by a dermatologist through an examination (not a biopsy) back in September of 2016. I was put on Clobetasol Propionate and told to use Aquaphor over it to avoid drying out the skin. I later received a Kenalog injection into my lower back muscle as well. The injection did nothing except cause a lot of facial swelling that lasted over 6 months. We later added Gabapentin, Tacrolimus, Amitriptyline, weekly Diflucan, and Kenalog injections directly in my vulva and near my anus. We also added Estrogen ointment, but that didn’t help either. The Amitriptyline, Clobetasol Propionate, and Tacrolimus helped a bit, but I was still in some pain and had lots of itchiness.

My dermatologist then sent me to a Physical Therapist in May of 2017. I worked with 3 Physical Therapists and went twice a week where we did stretches, internal PT, dry needling, and used essential oils. The pain when I would walk stopped, but I still had itching. I stopped taking the Clobetasol Propionate and Tacrolimus for a few days because I got a yeast infection, but when I went back on it they started to work. For 5 weeks I had almost no itching. Intercourse was still a little uncomfortable, but not painful. At the beginning of August I started feeling like I was getting a yeast infection. I treated it again with Diflucan and yogurt and took a couple days off of the Clobetasol Propionate and Tacrolimus. Since then some of the itchiness has gone away, but not 100%.

I no longer go to PT since I hit a plateau and they felt that PT was no longer making progress. I am also seeing a gynecologist who specializes in vulva disorders. She currently has me using CBD Oil every day. So far I haven't noticed much of a change.

Did you find anything that took the symptoms away completely? Also, what diagnosis are you leaning towards now?

I was also diagnosed with LS (without a biopsy, just based on symptoms and my response to treatment). in my case, clobetasol, topical estradiol, and nortriptyline ended up doing the trick. I'm not 100% pain free but can have pretty normal sex now for the first time in my life. I now do a lower dose steroid and the estradiol about once a week or once every other week for maintenance. I find if I go too long without using them, my pain definitely starts to worsen again. I am 99% sure I also have a chronic yeast problem or sensitivity which sometimes causes soreness, itchiness, and pain, so I use a ton of raw coconut oil topically and internally which is very soothing and helps fight candida. I've been more careful about trying to eliminate all excess sugar from my diet and I feel that's made a noticeable difference in my pain level. I highly recommend raw coconut oil and if you need a little extra soothing from itchiness, you can add in a few drops of tea tree oil.

I'm sorry you've been going through this too and haven't seen the results you want from everything you've been trying. keep fighting! sometimes it just takes time for the body to heal or there may be one or two last pieces of the recovery puzzle you just haven't discovered yet. I recommend keeping up with any PT stretches and relaxation exercises you were doing if you can do them at home on your own...I've found that sticking with them proved very helpful for relaxing the muscles and improving circulation over time. dilators are also really great to practice with. are you still using an estrogen ointment and was/is the estrogen a compounded formula or a prepackaged one like premarin? because I would definitely go with estradiol compounded in aquaphor if you have a lab near you that will do that...it's a higher quality estrogen that's more bioavailable and has fewer additives that can irritate you. for me estrogen was key to rebuilding my fragile skin and tissue and from what I've read that's pretty typical of LS, especially to counteract the steroids which can thin skin out over time, so not sure how long you were using it for but you may want to stick with it for a longer term if you haven't tried that already. I've read that topical testosterone can be helpful for LS too but never tried it myself.

hope some of this advice may prove useful to you. hang in there and best wishes for your recovery! you will get there. feel free to message me if you have any questions or would like to talk more